Just found out ive got lymphedema !!!!!!!!!!!

Ive just found out that I have lymphedema , Im still having chemo got two left , cant belive how feed up its made me . Ive stayed so positive through all of this and I feel ive hit a brick wall , Its made me so low and down , got to get sleeve tomorro but asked about it to breast care nurse and she said it wount not get any better so thats it not only do I have the worry of bc I now have this to deal with aswell how unfares that . Sorry to go on but I smiled and joked all through this so far but this has hit me harder How mads that !!!

Any advise more than welcome especially positive lol

Lisa with swollen arms hands and feet ( its so hot !!!)

Such bad luck, Lisa. I can well understand that it’s hit you hard. Bad enough to have BC let alone a swollen arm as well. I hope you get the treatment you need
Px

Hi Lisa

Sorry to hear your news. I got lymphodema before my last chemo last summer. Mine started out around 10% but have now got it down to 6%. I’m really naughty about wearing the sleeve but I do all the exercises.

There are some good threads on here called Lymphodema Training parts 1 2 and 3 the excercises really do help. I find mine is tight and more swollen in this heat and sometimes only slightly visible when cold and rested.

Judy

Hi Lisa Lisa

SO sorry you’ve been diagnosed with the big L.

You’re right, it’s a massive kick in the teeth when you’re already down.

Positive thoughts? Well, it’s currently incurable, but NOT untreatable, so it’s not unreasonable to hope for some improvement.

Is your arm only a little swollen? If it’s not, you might need to ask (or possibly insist) on a referral to a lymphoedema clinic/nurse. BCNs are sometimes able to deal with mild lymphoedema, but they don’t always have the training, or the time, to deal with more severe cases.

As Judy says, there are lots of threads in the Lymphoedema Category on here; including rants, info’, advice, clothes, sleeves, even a few items on research as well.

Have also sent you a pm

X

S

Hi Lisa,

As you know, i too have just been diagnosed fully, 20 pct apparently. The arm stocking is helping and i am coming to terms with it. There is a lot of help and support on here (bh2 thanks+++) - check out lymphoedema thread. I am just ahead of you as with everything we have been through, i am coming to terms with it and u will too.

Its a total bummer but all we can do is try to improve it.

All the best
Linda

Thanks Ladies
For all the advise good to know Im not alone thats why I love this site . Sorry not to good on here how do I go to the treads youve mentioned ( Bold blonde and chemo brain !!!)
Its a bit cooler today and not quite as swollen , Sleeve has been ordered but chemist says It should be here in 7 days …
Thanks again Lisa

Sory just found treads DURRRRRRRRRRRRRRR ,